Too bad. You don’t really get a choice. Is the beef industry trying to turn its customers into vegetarians? From the NY Times:

Eight years ago, federal officials were struggling to remove potentially deadly E. coli from hamburgers when an entrepreneurial company from South Dakota came up with a novel idea: injecting beef with ammonia.

I don’t know about you, but I’m disgusted. I knew the meat industry was corrupt and profit-driven, but naively thought they wouldn’t stoop THIS low.

Will you commit to reducing your meat intake by one meal a week? More? Will you commit to buying only organic meats, or meats directly from local farmers/ranchers? What are you willing to change in order to stop these guys? If we didn’t buy the meat, if it weren’t profitable to poison people, they wouldn’t do it.

What is interesting is the anger. It’s not just the obvious anger at the loss, the world, etc.

I’ve been experiencing a totally different anger. It comes out when well-meaning friends say things like, “I totally know how you feel because my <parent/friend/relation/favorite barista/whatever> had chemo for <insert type of cancer here that’s got a near-100% cure rate>.” I find myself shutting down, because my first inclination is to scream in their faces, “NO, YOU DON’T UNDERSTAND!”

Pancreatic Cancer is such a different animal from most other cancers. Unlike most cancers, there’s really not much hope of beating it. There is about a 99% chance that it will kill my dad. It’s just a matter of how long we have left with him. If I try to talk about how it feels to be on limited time, people say, “think positive, don’t say that!” It feels like they’re encouraging me to be in denial for THEIR comfort. It feels like most people don’t want to understand. It’s too scary to think of our mortality.

I know people mean well. I know they don’t really know what to say. Sometimes, the best thing to say is “how are you doing?” But only if you mean it, and are willing to hear the answer. Just STFU and just listen. No need to say you’re sorry, or try to comfort. Just asking is enough.

While visiting my dad on Christmas, we overheard a conversation that had us all giggling.

There was a 92-year-old man in the next bed. Poor guy wanted sourdough toast, and nobody would bring him any because it wasn’t on his approved list. After the guy asked for toast for about the 12th time, Dad said, “Jesus! The guy is 92 years old and has about 2 weeks to live – bring him some fucking toast!” This is one of the reasons I love my dad.

A little later, the older man’s family was visiting him.

The sons (I assume they were his sons) were bantering a bit, and one said he was working on getting “back in shape.”

1 quart beef stock
1 quart chicken stock
(Vegetarians substitute “better than bouillon” pastes in chicken and beef flavors)
½ onion, left whole
3 cloves garlic, left whole
2c white beans (pre-soaked) or 2 cans cannellini beans, rinsed
2 t kosher or sea salt
1 t freshly ground pepper
2 sprigs fresh thyme
½ pound andouille or portuguese sausage, sliced (vegetarians, substitute tofurkey or soy chorizo)
2 large bunches kale
1 stalk celery, diced
2-3 carrots, chopped
garlic salt or minced garlic + salt (to taste, if needed)
Add stock, beans, onion, garlic, salt, pepper and thyme to crockpot or large heavy soup pot. Start the previous night or early in the morning and cook all day to allow stock to become very rich.
After 8+ hours of simmering, fish out garlic and onion. Add more liquid if needed. Add andouille sausage and cook until you can smell the soup throughout your house. You’ll know by the rich smell when it’s done. At this point you can set it to “keep warm” setting on your crockpot or stove, and let it be for a couple of hours if needed.
1 hour before serving add kale, carrots, celery and garlic salt if needed.
Serve with good crusty buttered bread.

Makes approx. 5 quarts soup (20 servings.) If you’re not having guests, you can seal it up in sterile jars to store, or freeze portions for later. Hint: use 1-quart ziploc freezer bags, mark the outside with the contents, and store flat in the freezer to save space.

2009 was a rough year for many of us, and in fact 2000-2009 was a bit of a rough decade. My hope is for 2010 to be significantly better.

My wishes for the new year:
For my father to be the one person who beats one of the deadliest cancers in existence.
For my husband and me to both be promoted so that our salaries catch up with the work we’re actually doing.
For my friends who are unemployed to find fulfilling employment.
For the world to find a little more peace, and a little less chaos.

I get a ton of people landing on my blog after searching for “ankylosing spondylitis doctor seattle” or “lisa davison seattle” or “rheumatologist seattle.” I’m afraid they’re ending up with outdated information, so today I’m going to talk about doctors: who I see, and why.

1. General Practitioner
I used to see Dr. (Sari) Lisa Davison. However, last year I was REALLY sick with severe lung issues. I kept going in to see her because I couldn’t breathe, and she kept putting me on different asthma treatments. I told her I was pretty sure it wasn’t asthma, and that something else was wrong. She declined to refer me out to a specialist, and continued prescribing inhalers and steroids. Finally, I couldn’t catch my breath and I called her yet again. She told me to go to the ER, as she couldn’t do anything for me. I felt, by this time, like she thought I was faking it all. When I got to the ER, my oxygen saturation was low, my heart rate was high, and my BP was very high (normal for me is 80/60 and it was in the neighborhood of 150/120)

The ER doctors treated the immediate issue, ran a ton of tests, and referred me on an emergency basis to a pulmonologist, who saw me the next day and ended up diagnosing a rare obstructive pulmonary disease called Bronchilitis Obliterans with Organizing Pneumonia. Dr Davison billed me for all the visits in which she failed to refer me out, not even cutting me a break when I had to keep coming in due to her errors. She was rude and dismissive, and basically washed her hands of me. I currently have a “generic GP” I picked from the offices where my pulmonologist works, and I’ve seen him only once, so I really have no opinion one way or the other on him.

Bottom line, she doesn’t listen when a patient tells her “I know my body and something is wrong.”

2. Pulmonologist
My pulmonologist is Dr. Derel Finch at Minor and James Medical Center in Seattle. He’s fantastic! Truly a great doctor. He explains what he’s doing and why, and listened when I told him I didn’t think I had asthma. He figured out the puzzle of my lungs quickly, and ordered me on bedrest for nearly 3 months to recover. It was almost relieving when he told me that he had patients in the hospital who were less sick than I was. There was something very validating about hearing that from him when I felt so very sick and the previous doctor had blown me off and made me feel like a hypochondriac.

3. Rheumatologist
I wasn’t happy with Dr. Steven Overman at the Seattle Arthritis Clinic. He wasn’t willing to be aggressive about getting my arthritis under control. He also didn’t believe I had been as sick as I was telling him, and refused to read the notes from Dr. Finch. In addition, he changed my diagnosis from visit to visit, one time confirming that I had Ankylosing Spondylitis (which had been diagnosed 10 years ago, and is without a doubt what I have) and then the next time saying I didn’t have anything wrong with me that losing weight wouldn’t fix. When I told him I’d been on a serious fitness plan before getting sick with my lungs, he said I probably overdid it and just got tired of working out. (I did not. Working out is something I truly look forward to, and crave) He opined that there was nothing wrong with my lungs and that I was exaggerating how ill I’d been, and that I am just lazy and don’t want to be well.

Dr Finch (Pulmonologist) referred me to a Rheumatologist in his office, Dr. Natalia Tishkevich. She’s been nothing short of wonderful. She not only reaffirmed my original diagnosis of AS, she also said I have plenty of the criteria to be diagnosed with Lupus, but that she’s not going to put it in my chart as it won’t change how she’s treating me and will potentially cause insurance issues if I ever have to buy my own. So she put me on a medication that works for both AS and Lupus. I’ve been on it nearly a year and never felt better. My joints are mostly good, and while I still have some amount of stiffness and pain, it’s not nearly like it was. She also respects the fact that I’m not interested in narcotic pain medications if I can avoid them, as I have a job that requires me to be mentally sharp at all times. I’ve recommended her to a couple of friends, and they love her as much as I do.

So, there you have it.

It may seem as though I’ve had a lot of bad doctors. I’ve had a couple who were bad enough that my health got worse while I was seeing them. Fortunately, I’ve also had some really great ones, who have helped me manage my illnesses and feel the best I can feel. It’s unfortunate that those of us with serious illnesses have to work so hard to find a doctor who will listen and help. It makes trying to get healthy very much more difficult than it should ever be, and perpetuates the myth that people who are sick *want* to be sick in some way.

I spent Christmas Day at his bedside. The first couple of hours were just him and me, which was really nice. We sat in silence some, and then when he had the energy to talk, we talked for a few sentences, and then silence again. He said he really enjoyed that a lot.

My mom, my brother and his girlfriend came by a little later, and we traipsed down to the hospital cafeteria for some Christmas Lunch. They had ham, cheese ravioli and sloppy joes. We each got our choice, and we brought back two extras – one for Dad and one for my husband who was home with a cold. We had lunch in Dad’s room, and then some old family friends showed up with a really special gift.

The family friend is a collector of antiques. Dad was at her house once about 20 years ago and was surprised to see an exact duplicate of his grandmother’s unusual depression glass vase on the mantle. The friend gave it to him now, 20 years later, and it was such a perfect gift. He absolutely loved it.

We ended up celebrating Christmas for real on the 27th. We had soup and salad, and gifts. It was nice to not do the big turkey meal, as it allowed us to spend the day visiting rather than cooking. Lots of great gifts were exchanged, and a good time was had by all. I even managed to pull off some really neat surprises.

Dad’s home, and exhausted. He can’t make it up the stairs to the bedroom yet, so he’s sleeping in a recliner. He’s got 4-6 weeks of IV antibiotics to complete, and then they’ll talk about whether to do more chemo, radiation, or what. I’m just glad he fought his way through this setback. It was really scary for a few days there.

Dad’s doing MUCH better as of last evening. He might get out of the hospital today. If not, it will be tomorrow. They found the source of the infection – a stent they’d put into his bile duct back when he was diagnosed with cancer in July. They were able to remove it, along with a huge pocket of infection. He’ll likely be on 4-6 weeks of antibiotic infusions, and then he may or may not have to do another round of chemo when he’s strong enough. We shall see.

Still taking it all day by day, but death is no longer imminent, so that’s huge.

Thank you all for your thoughts, wishes, prayers. I really think they’ve helped.